have two. give one.
Finding a Kidney for Shanelle
Shanelle needs a kidney transplant and hopes to meet a donor soon.
Hi there and thank you for taking the time out to visit my page and to read my story!
My name is Shanelle, I’m 31 years old and in April of 2017, I was diagnosed with stage 5 Chronic Kidney Disease.
I hope to shine a little light about this disease and to inspire supporters to share my story in hopes to find a potential donor.
Chronic Kidney Disease also called End-Stage Renal Disease, occurs when the gradual loss of kidney function, reaches an advanced state. In End-Stage Renal Disease, the kidneys are no longer able to work as they should to meet your body's needs.
The kidneys filter wastes and excess fluids from your blood, which are then excreted in your urine. When your kidneys lose their filtering capabilities, dangerous levels of fluid, electrolytes and wastes build up in the body. In most cases, having a diagnoses of End-Stage Renal Disease lead to dialysis treatments or a kidney transplant to stay alive.
God willing I will try my best to tell my story. Those who truly know me, know that I have a hard time being vulnerable. I’ve been in a space where I didn’t want to process what has been happening to my mind, body and spirit however, after being on dialysis for 39 months and counting, my body is tired, I am tired and I want to put an end to this battle with kidney failure.
Growing up I was a very physically active person and have always taken care of my body. I ran track from the time I was six years old and continued with a sports and fitness lifestyle through high school and college. Having been so active and health conscience, I began to suffer from frequent headaches and started having symptoms of edema in my ankles and feet in the spring of 2015. I was treated initially for high blood pressure and mild anemia and didn’t have any other symptoms like extreme fatigue until two years later.
In late April of 2017, I received a phone call from the head of endocrinology at my endocrinologist’s office asking me to go to the emergency room. He wanted me to repeat some labs that I had done the day before as he explained my blood work came back abnormal. Nonchalantly and thinking nothing of the conversation we just had, I debated back and forth about getting out of my bed at 6 am, on a Saturday, and going. I was thinking to myself “I don’t have time for this, I am going to miss my hair appointment.” Priorities right?! But after some persuasion, my then boyfriend took me to the emergency room. I was immediately given medical attention and the waiting game began.
During that time, nurses, physician’s assistants, and emergency room physicians came in and out of the room as they took my vitals every 30 minutes and examined everything from my scalp to my fingernails. Surprised that I looked physically normal, the results of my blood work were saying the complete opposite. The hospital’s nephrologist walked into my room with a surprised facial expression as she looked like she was expecting someone else; like a much older or sicker person . I knew a bombshell was about to be dropped but at the same time I felt like she was going to repeat something that I’ve been hearing for the past 6 months regarding my high blood pressure. But before I could process or accept what was going on, I remember her asking me how I felt as she checked my vitals herself. I told her my symptoms, which I thought were fairly common, just some fatigue, migraines, and loss of appetite here and there. I thought I just needed some rest.
As she listened to me, she shook her head and then finally explained her purpose for being in the same room as me. She went on to utter the statement, “You are in kidney failure, and we have to give you a blood infusion right away.” In that time frame, I was truly in an anxious and foggy state of mind and I didn’t realize what was happening. I looked over to my boyfriend and he had this look of disbelief and fear on his face. I didn’t know what to say or even how to react. In my mind, I’m saying, “Okay lady, go ahead and give me some of this blood so I can go and make my hair appointment.” It was not until I heard her say how many bags of blood was needed that I realized that I wasn’t going anywhere.
She and the other physicians in the room began to go over the results of my labs with me and started explaining that my potassium level read 4.1 which is pretty normal however, my blood urea nitrogen (BUN) read 121 (normal is 20), my phosphorus level was averaging at 11 (normal is 2-3), my metabolic acidosis or acidity level read 13 (normal is 22-27), my hemoglobin read 5.7 (an average for women is 12-15), and my creatinine was 18 (normal is 0.6 to 1.1 for women.) Additionally, my iron deficiency caused me to be severely anemic. I was dying. So after a long morning of waiting, tests, and feeling as if I was a human experiment, I called my parents to explain to them what has been the worst news of my life. They were in Charlotte six hours later.
During my exhausting week long stay at the hospital, I had a minor surgery to place a permcath in my chest, underwent a kidney biopsy, a thyroid biopsy, and a series of other urine and blood tests. I was pricked and poked so much, I had bruises all over my body for weeks. I went from being a size 10 to a size 2 in a matter of a few months. I quickly had to adhere to a low carb, low potassium, low phosphorus, no salt and high protein diet and a strict medication regimen that includes 14 different medications. I had to change my workouts as I can’t perspire or sweat at risk of getting my permcath infected. And, the most difficult has been the fluid restrictions as my recommended fluid allowance is ONLY 32 ounces a day. This includes anything that dissolves or becomes fluid when you eat it.
A week later, the results from my kidney biopsy indicated that I had a disorder in which my body’s immune system attacked my own cells and organs. In my case, kidneys. I have a form of lupus called, Lupus Nephritis and I’m still learning more and more about the disease as it's a relatively unknown disease. In order to stay alive, I travel to a treatment clinic three times a week to receive a three and a half hour long hemodialysis treatment as a machine artificially acts as my kidneys to filter the waste, toxins and fluid from my kidneys. Since being diagnosed, I have been hospitalized five times for non life-threatening but kidney failure related complications and I continue to work closely with my doctors, nurses, social workers and other healthcare professionals to review and manage my treatments and overall physical and emotional health.
Throughout all of this, I realize that I have limitations that most people my age do not and as you can imagine it has been a challenging year and a half for not only me but also my family and other supporters. However, I continue to live my life with a tremendous amount of appreciation. I currently work full time as a School Counselor in Charlotte, NC, volunteer as a Big Sister with Big Brother Big Sister and make the most out of the rest of my time by indulging in the things that make me happy. I love to watch movies and binge watch tv shows, eat Chipotle, potato chips and chocolate, in moderation of course, push my credit card limit to the max at Target and most importantly spend my time between Maryland and Texas with my close family and friends. I have high hopes that this journey with dialysis will soon come to an end and that I will return back to full health.
Unfortunately, a Kidney Transplant is not a cure for Kidney Disease. The average life span for a donated kidney is 10 to 15 years and after losing nearly 90% of my kidney function, a kidney transplant is a suitable alternative to dialysis.
When it comes to exploring my treatment options, there are 3 main possibilities that can replace my diseased kidney.
Living Donor Transplant
Relatives, friends, neighbors can all be considered as donors. After being evaluated for general health and to see if your blood type and immune system are matched closely enough to mine, a surgery will be scheduled. The donors procedure will be covered by my current health insurance.
Kidney Swap/Exchange Program
A Kidney swap and exchange occurs when a donor/recipient pairs will trade organs. For example, if Donor A was unable to donate to Recipient A, they could donate to Recipient B. Recipient B’s donor would then donate to Patient A.
This is my current treatment option and traditionally if there is no potential living donor, I must wait for a cadaver organ until a deceased donor becomes available. I am registered on the waiting list at United Network of Organ Sharing (UNOS) and my wait time is anywhere between 3-5 years.
The ultimate goal of matching a donor kidney is identifying another kidney that will be tolerated indefinitely by the body. During the compatibility process, It is helpful to divide the donor and recipient matching into three distinct areas: blood type matching, tissue type matching and cross-matching. Each is a distinct and important aspect of donor and recipient matching for which specific, complex laboratory tests have evolved. Each applies to kidneys from both live and deceased donors.I follow under the O+ blood group which is leading to a longer wait time as my average wait time for a deceased donor is 4 years.
Thank you for taking the time to read my story. If donating a kidney to me is something you would like to consider, I would be happy to tell you more about my story and explore the process of determining if you are a match for me. Transplant programs also require written informed consent process that informs the prospective living donor of all aspects of and potential outcomes from living donation. The transplant team often includes a third party advocate to help you explore your feelings and assess your emotional and financial preparedness for living donation. Prospective donors can get worked up and do so without telling me, in case they want to simply inquire about the process. Getting worked up does not indicate a commitment to do the transplant. It is also important to know that you may change your mind at any time during the process. Your decision and reasons are kept confidential. I am aware that the transplant team and the donor have a final say on whether a transplant would go forward.
I encourage you all to visit the National Kidney Foundation website (link to the left) or contact the NKF’s free, confidential helpline at 855.NKF.CARES (855.653.2273) to learn more about living donations and to talk to someone who’s already donated a kidney.
As previously mentioned, I am doing this with the hope that it may yield a positive result for my overall health. If you think that you have an interest and have some questions about the process, you can also contact my transplant hospitals and my donor transplant coordinators for my case at, John Hopkins Medicine Hospital in Baltimore, Maryland, Atrium Health in Charlotte, North Carolina, and or UT Southwestern Medical Center in Dallas, Texas. For all inquires, you'll need to give the donor transplant coordinators listed below my name and they will guide you through further steps to obtain information about the donate process. Below you will find the online applications for each hospital.
Tel. (410) 614-9345
6 00 North Wolfe Street
Baltimore, MD 21287
Tel. (704) 355-3602 or (704) 352-6649
PO BOX 23861
Charlotte, NC 28232
Tel. (214) 645-1919
5939 Harry Pine Blvd
Professional Office #2, Suite 700
Dallas, TX 75390
THANK YOU to all who have donated to me and supported me this far! I encourage anyone who is willing to visit my online gofundme fundraising page to give a donation. You can also cashapp me donations. All donations will be saved and will eventually go toward my transplant procedure and other related medical expenses. Click the buttons below to access platforms.
I want to give a HUGE shout out and THANK-YOU to my parents, siblings and other family members, extended families, colleagues, and overall any and every person that I have encountered who has prayed, donated and sent warm thoughts and wishes. As I continue my journey, I ask for continuous prayers, thoughts and wishes.
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